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No more Depakote! Party time!!

Fri, 03/04/2005 - 13:23
Topic: Medication Issues

I've not posted a lot here on the site, but I wanted to let you all know what we're doing on Friday night.  My 8 yr. old daughter was diagnosed with complex partial seizures on November 2 and was immediately put onto Depakote.  To say that we hate how that medicine affected her is an understatement.  After meeting her neuro on December 20, he wanted to switch her to Lamictal....so we began the long process of weaning meds.  Krystyne is normally a very happy, active, cheerful little girl.  Everyone who meets her loves her.  She's just got one of those personalities.  Well--that all began changing after the Depakote was started.  She didn't have any really bad reactions or anything like that, and her seizures stopped after a few weeks.  She was just tired all the time.  She wasn't telling jokes and making people laugh.  She went to school, played basketball, wrestled, and slept.  Sometimes she would have to take a day off of school just to catch up on sleep.  It broke my heart to see my little girl like this.  Well, last week I noticed a change.  She'd already cut out 2 doses of Depakote a day and was only taking it once a day.  She was laughing and telling jokes.  She was able to play the ENTIRE basketball game on Saturday.  She wasn't tired.  She didn't want to snuggle up on the couch at 6:00.  WOOHOO!!

So--we decided to throw a "Pink Party" on Friday to celebrate that last dose of Depakote being taken.  (Depakote is a pink pill for those of you who have not taken it)  We've invited family and friends over, and all the food will be pink.  We've invited people to wear pink if they would like to, and to also bring something pink that they HATE to throw away when Krystyne throws away the remaining pills she has.  We're also going to release pink balloons--as are friends and family around the state.  We can't wait for this party...and I just wanted to share some fun with you guys here!

Veronica  (and Krystyne)

Comments

RE: No more Depakote! Party time!!

Submitted by pongosmommy on Wed, 2005-03-02 - 22:47
That is a great idea.I am glad that she is feeling better.

RE: No more Depakote! Party time!!

Submitted by patricemit on Thu, 2005-03-03 - 01:24
HiMy daughter also had a personality change on depakote. It was great to have the grand mals stop, but I hated what that medicine did to my child. She became irritable, confused, tired, gained weight, couldn't focus, but most of all became a very angry girl. She began to have panic attacks on depakote.We tried lamictal after depakote. At first the drug was great. She lost weight immediately and most importantly she had seizure control. Unfortunately, after 4 months, my daughter broke out in a terrible rash and had a grand mal. The seizures started once more. We had to make a very hard decision. Another drug study or back to depakote. Again, don't get discouraged, some drugs work better for some.Listen to yourself and talk to your child's neurologist. Fortunately I had a Dr. for my daughter that would listen to me and my child.After lamictal we tried zonegran. Zonegran had the worst side effects of all. My daughter regressed socially and was so confused that she couldn't remember how to tie her shoes or for that matter which shoe went on what foot. I am not exaggerating! She came out of one of her college classes with her boots on the wrong feet!!!! Zonegran again, did not control her seizures and she had a terrible tremor.We decided to go back on depakote so she could finish her two years at community college without seizures. After a year back on depakote the Dr. suggested we try keppra. Keppra is rarely used as a monotherapy or for that matter it is rarely used to control JME. We tried to get her depakote down to the lowest dosage and kept tapering up on keppra. My daughter liked how she felt on keppra and since she didn't have any seizure activity we decided to keep going until we tapered off depakote completely and tapered up on keppra.Every drug has it's problems. She developed restless leg syndrome and has to take klonopin in the evening to control her leg movement. The good news is she hasn't had a seizure in 2 years. She is a junior in college living in a dorm and loving life.Her personality is back, she doesn't have any weight issues, she is not confused, and she doesn't have panic attacks. She is in a good place for now.I think your party idea is wonderful. If lamictal doesn't do the trick for your child then you can always have another party and try another drug. Eventually, you will find the right one! Your daughter is really lucky to have a Mom that is embracing this disorder and helping your daughter to help herself. Congratulations on taking the big step off depakote. It is a really difficult thing to do. Patrice

RE: No more Depakote! Party time!!

Submitted by spiz on Thu, 2005-03-03 - 10:21
What a cute idea! At her age I'm sure it'll give her a sense of accomplishment too! It's obvious she has a mom that will help her develope a positive attitude. Smiles!!!! -Spiz

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